We were at the Oireachtas to make sure EB care is prioritised

On the eve of #RareDiseaseDay2024, Debra’s Head of Advocacy, Research and Policy, Sinead Hickey, along with Deirdre Callis, Head of Family Support Services, and Dr Rosemarie Watson, Debra Board member and former Director of EB Services in Ireland, presented the need for access to health services for people impacted by EB to the Oireachtas Committee on Health.

We were also joined by Casey Connors (who lives with EB) and her mum Rachel.

During the session, Debra representatives were able to present the findings of the report we launched with the University of Limerick at the end of 2023. This report reviews the evidence related to the impact EB has on the quality-of-life for people affected by this condition. It also examines access to services and supports across five countries, including Ireland.

As part of their presentation, Sinead Hickey focused on the challenges presented by the unreliable provision of home nursing care for people with EB, including the lack of a contingency plan for when nursing staff are unavailable or move on.  

She also highlighted the significant impact of EB on the mental health and quality-of-life of those with EB and their families. A key recommendation based on the research was that extra funding should be provided to help appoint a clinical psychologist dedicated to supporting adults with EB.

We hope that the findings of this report can inform the implementation of the recently published HSE National Rare Disease Office Inherited Epidermolysis Bullosa (EB) Paediatric and Adult Care Pathway, a crucial document outlining the breadth of support needed by people with EB across acute and community settings as well as the HSE Rare Disease Plan currently being developed.